HYPERTHYROIDISM... is HYPER =p

So lets take some time to discuss HYPERTHYROIDISM...

but wait thought you said u lost ur thyroid gland... wont u be underactive aka HYPOthyroid?

Good question-- I am on Synthroid (and for u people with thyroid issues ALWAYS TAKE SYNTHROID ... there are no substitutes!!)  A very high dose actually. To help explain what the thyroid does... i will google a nice picture...   ah  there we go...

                                   
That says that the brain tells the thyroid to make thyroid hormone... it travels in the body and ...

• REGULATES METABOLISM-- needs to be in a delicate balance... too low and ur tired and not enough energy is produced; too high and to make ur body work in overdrive and over produce energy ur body has no use for 
• As children it is necessary for proper GROWTH of all tissues and ESP THE BRAIN... must have thyroid hormone in a delicate balance for the brain to function and develop normally!!
• Acts on the cardiovascular system to increase cadiac output (how much blood the heart squeezes per beat), heart rate, and contractility of the heart (how much force the heart squeezes with). Finally it aids in peripheral vasodilation improving blood flow to the internal organs
• Central nervous system: works in a BALANCE to stabilize mood, anxiety and nervousness
• Fertility- need to have normal thyroid levels to ovulation

You can see every cell in the human body responds to thyroid levels... pretty damn important for a tiny little thing huh?

BACK TO THE CANCER

When my body is without my synthroid my brain will tell the absent thyroid to produce more hormone (using a chemical called TSH - thyroid STIMULATING hormone... this is bad... dont want my cancer to be STIMULATED... dont want to encourage ANY thyroid growth... so they keep me at a pretty high dose of hormone - much more so than most... basically inducing HYPERthryoidism to keep the cancer from coming back...


Wait too fast what is this Hyper/Hypo thyroidism u speak of?
                       
Basically that above... and for me...

   neither was/is fun.. HYPO is the WORST cause u get this fog... u cant think... u cant remember words and u talk really slow... takes A LOT of effort to stand and walk... its like being demented but having enough brain left to know ur head and body is messed up!  U are too tired to breathe... u just want to sleep... Being hyper is no picnic either.  My Heart Rate (HR) went up to 100-120 bpm (beats per min)... no bueno... that will make my heart work very hard- making my blood pressure (BP) go up... that angers my kidneys and heart even more sending me into early onset heart disease = no bueno.  U lose weight maybe- but its muscle weight.  U talk real fast... if u thought i was bad before u should see me now LOL


SO about 3 days or so post op i started to feel VERY HYPER... oh so bad...

• i was shaking, jittery and felt constant waves of adrenalin... that wouldnt shut off
• my heart rate skyrocketed to round 110s to 130s on avg and i could feel it
• My hands would shake a lot
• wont go into detail but the bowel problems... no bueno... 
• very irritable and cranky (poor husband!)
• ironically i was very cold still... if it dropped below 78 i would wear long sleeves and sweat pants... for some reason i am always cold now... 
• I N S O M N I A... for going on 3 weeks now... yup cant sleep.  HR was way way too fast... body not calming down long enough... i was wide awake until round 7 am slept til 10-12pm waking up every 1/2 hr or so as i cant stay asleep nor get comfortable given my messed up numb back/rash/pain and leg and neck issues =\
• I quit eating.  Didnt really lose weight that i can tell on the scale anyway but also would go with one meal maybe  2 a day and not eat much ... i thought i was hungry but when i had food i just didnt want it.

THEN
post op day 6 my leg looked way more swollen like it had edema (fluid) around my op site.  I had a mild fever that didnt go away with tylenol and whats worse i couldnt walk on my leg anymore... it hurt A LOT...

so yes all u medical buddies i went to the ER around 10pm at night... when i was triaged my HR was 150s my bp was 180/110... still had a fever.  They said u have high blood pressure ? i said NO never... post op i was discharged with BP 120s/80s (my normal).

What happened??

Well i think i was so uncomfortable due to back/arm/numbness/rash/leg issues it over stiumlated my hyper state and kicked it into overdrive. when those chemicals are created- they dont go away fast.  And i was in constant pain.  I tried to take meds but 2 pills every 4 hrs did NOTHING... i was foggy headed, nauseated but back hurt like hell still... SO i was observed overnight they gave me IV pain meds and fluids and antibiotics for what looked like a cellulitis

HOWEVER

turns out the rash doesnt fit any particular reaction.  It doesnt fully represent shingles, or some wierd dermatits or ulcer.  When i saw the nerve surgeon he was pretty sure i had a drug reaction!!  well the only drug i got that could be to blame was Ancef (related to the penicillin class)... SO they are gonna test me for that later but the going theory for the moment is that i had a drug reaction that didnt help the hyper state either IN ADDITION to the issues i had from bad table placement for WAY too long =(

I saw my PCP and  begged him for BETA BLOCKERS... YEA ... 

I was so hyper - in every sense of the word... it was so EXHAUSTING...  think of how u felt when ur scared - i mean really scared or traumatized... then picture it never ending.  =( no bueno

so he gave me a medium dose of pills to BLUNT the effects of the adrenalin type hormones.

This week

• I can get round 4hrs sleep at a time which is much better
• My HR is down to the 80s-90s, blood pressure still up though 130s/100s (should be back down to 120s/80s
• The adrenalin is LESS... i dont feel jittery and shaky and anxious... I even talk less... 
• I can relax at least once a day which is great... by that i mean i feel calm... 
• to put in perspective: getting up from a chair to pee is enough for a flood of adrenalin to pump into my body that lasts hours!!! so yea being able to walk around, do normal activities of daily living and NOT feel so AHHHH all the time is so refreshing
• My rash is red but less angry, no more pustules
• My back still numb and most of top of arm feels dead- leathery dead
• My skin in neck and chest and ear is waking up YEA
• didnt help hyper state either.  Put a battery to ur tongue and hold it there... 24hrs a day... WAVE after WAVE of electrical shocks just like the panels on ur heart zissst zissst ALL THE TIME... doesnt help me sleep or relax or keep my BP and HR down
• on the up shot YEA if skin is waking up then nerves are healing.  And its annoying to jam the telephone in my right ear cause i cant feel where its at... 
• I CAN WALK =)
• I know they said i had some drug reaction but that leg looked awfully angry and after 7 days of clindamycin it cleared right up and i could walk on it without a cane
• MY VOICE... 
• well i dont know.  It recovers faster when its tired.  At some times i sound really normal and then i cough... i cough alot... then i wake up and i could be a whisper so i dont know i think its still healing?  will keep an eye on it but overall im going with better

WHATS NEXT?

I do bloodwork again in 2 weeks.  They will check my tumor marker and my TSH level.  They did reduce the dose of synthroid but i dont have much wiggle room as i need to be supressed to keep the cancer from persisting.  Also when the dose changes... takes my body 8 weeks to really feel that difference.  So cant wait for that to happen! I see the PCP again also in a little over a week and im guessing this beta blocker will have to come up a bit higher as i still struggle to sleep and have hyper symptoms.

For first time i do feel like im mending and things are getting better.  GOD WILLING i will be back at work right round thanksgiving and PRAISE GOD be DONE WITH THIS... 

Again they will check me in 6mo -- this time probably ONLY with ultrasound and bloodwork... remember my iodine scan was negative... it said cured.  and i wasnt.  a little less than half the lymph nodes removed were positive for cancer.  means im resistent to the radiation.  It can happen when the dose is that high.  kinda transforms the cells so they can survive it somehow... so at this point the only treatments available to me are surgery, experimental chemotherapies and external radiation -- NONE of which work well.  but he thinks he got it all and i feel satisfied with that.  my thryoglobulin level was pretty low to start so i really have good feelings that this test will come out GREAT... 

then i get checked every 6 mo x 2 or 3 times then it goes out to a year x2 then they extend it to every 2-3 yrs etc... 

and that is my life... and im thankful i have it.  Several other people get cancers that spread and dont hang around 6 months to blog about it... so i am blessed to have all of u and to be mending... and moving on

I heart u all ... its 3am and time for me to try to sleep ;P

take care and good night!

6 months later....

Sorry for those who havent heard from me in a LONG TIME... over the last few months was adjusting back to work, then making up for lost time, then started the scanning process all over and well here we are...

To back up...

When i left u guys last- i had right vocal chord paralysis post op from my total thyroidectomy (removal of thyroid gland) as well as 22 positive lymph nodes.  I also had a really high dose of Radioactive Iodine in hopes of ablating (destroying) any left over microscopic tissue... in order to resume working i had a vocal chord injection, using similar material they use to fill lips n wrinkles to physically move the vocal cord over.  (its called Radiesse voice if i remember)... that injection lasted about a month, then the coughing , breathyness and difficulty doing my job ensued.  So in Aug i had injection #2.  That one made my voice almost perfect for bout 2.5 weeks. I was in bliss.  Didnt feel broken.  Then i started coughing a lot.  When they did injection #2 the ENT (ear nose throat doc) said the top of the vocal chords were making contact but the bottoms were not =( so he aimed hard to get to the back of the chord to move it into a better position

see pic below
  

the process looked like this

The needle is placed just to the side of the paralyzed vocal cord.

With injection of a biologically compatible substance, the vocal cord is pushed to the midline.

Those injections are very uncomfortable i wont lie, but they gave me better quality of life and i was able to do my job with less stress as i could be heard and function without sounding like i had the plague


SO what happened between Aug and now??

First in September I had my first 6 mo post op ultrasound.  They will scan me every 6 months to follow the cancer persistence or recurrence until i have 2 or 3 that are clean... Mine was evil looking- had 2 places that they were concerned about.  Before u say it - the surgeon didnt miss anything- he couldnt see it... Turns out there was a lymph node hiding right inbetween my carotid artery and internal jugular vein (upper middle neck) as well as another one right under my clavicle in between my subclavian artery and vein.  Well these are very trickly places to get to with a needle to biopsy.  After the ultrasound a week or so later i had another radioactive iodine whole body scan.  THANK GOD they did NOT have to take away my medicine... I love synthroid... think everyone would be a little happier on doses of it HEHEHE but i digress

So the whole body scan said i was CURED... YEA ... but wait... hmmm my ultrasound still showed concerning nodes ... and my blood still had an elevated tumor marker.  Thyroglobulin antibody (my body trying to kill the cancer)... My level pre op was like 36 or so came down to 13 post op day 1 then went back up to 23 or so around my radioactive treatment then stabalized around 11... none of that is 0 which is what i needed.  SO they sent me for fine needle biopsy again...

HOWEVER they couldnt do that- the doc tried but those two spots were in such a BAD BAD dangerous place that it wasnt a good idea to try... SO

BACK TO THE OR I WENT... on OCTOBER 17th 2012...

my second operation was a modified radical neck dissection with lymphadenectomy (in other words they are going hunting for ANY lymph nodes in the right side of my neck)... This was for a cure (hopefully)... take out those two bad spots and any others that may grow in future and i ll be DONE...

as i was getting ready for that the oncology surgeon offered me a way to try to improve my voice as i do struggle with it daily... NERVE GRAFTING... =)

Basically they take a motor nerve from my leg ( those are nerves that makes muscles move) and implant it in my neck much like u connect two cables that are freyed... Why u ask would they do this?  Cause this time he was going to sever and remove a good chunk of my recurrent laryngeal nerve... so if i had hopes that it would heal after Oct 17th... NO CHANCE...
                      Basically this pic helps explain it except the nerve they took from me was in my thigh =)
                                               


I saw a Plastics Hand Surgeon from UMH (yes plastics and yes hands... why cause they are SOOOOOO GOOOD at attaching and fixing tiny nerves in the hand which makes them a specialist at nerve grafting which is what i need... there isnt really a doctor that ONLY does voice nerve grafting) anyhew

He said i was a great canidate (young, non smoker and 6 mo out post op)... So i signed the consent praying insurance would cover it... a few days later got the notice that it was PAID IN FULL ... =)

March 1st i went into the OR at 745am and i woke up at round 5pm... =(

first thing i saw was my BACK HURT LIKE HELL... it burned so bad my instinct was to raise up but when i tried to move my arm--- it wouldnt really move... could barely lift it... turns out i had been on that table bout 2-3 hrs longer than i should have and it was a long surgery to begin with.  I am a heavy lady and unlike everyone else when my arm and or back falls asleep my body couldnt wake me up to tell me to move off it.

My skin was numb from my right ear down most of the way to my left breast.  My arm was numb from my chest half way down to my elbow.  My back was numb from between my shoulder blades about 4-6 inches down all the way across.  My back burned so bad hurt WAY WAY more than anything else.  Turns out i had this narly rash.

When i woke up the next day started to look more like this ...

Because i couldnt walk, move much or stand and i was SOOO WEAK i stayed 2 days in the hosp.  I was discharged with pain meds and the recovery process started... I had a little over a foot long incision in my right thigh where they went after the motor nerve, surgeon put about 4.5 cm spliced into what was left of my recurrent laryngeal nerve.  Good news is i felt like i had a louder voice almost immed post op.  For those that dont know- it takes MONTHS before i should see results... dont know why i was  and continue to be louder than b4 and my voice recovers faster... BUT I LL TAKE IT =)  and be THANKFUL...

ok this is long enough stay tuned to find out how AWESOME HYPERTHYROIDISM IS... =)

Part 2 To Be Continued...

Much love and many blessings to you all =) and thank you as always for the happy thoughts prayers and to those who have to make up for my absence at work... this has not been an easy road for anyone! and without great amazing people moving in my life i dont know where i d be =)

Voice Struggles... ARG

So its been awhile since my last update... heres the latest...

SO I had the radiation and did pretty well afterwards.  I have woken up everyday since with a terrible sore throat and I get tingles in my neck from time to time, but I am overall doing okay.  I have been on 150 mcg of Synthroid for 3 weeks now, and I was so HAPPY I got to stay on cytomel for 2 weeks which really helped to bridge me and get me outta that terrible hypothyroid place!!

Sadly as all my other symptoms started to go away, my voice kept getting worse and worse.  I got a follow up swallow study which showed that nothing changed, I am still paralyzed on the right side.  Speech therapy gave me some exercises to try and said to practice and work on my breathing and I should be on track to go back to work... YEA...

THEN...

My voice went to a whisper.  I would say maybe 3-4 sentences to my husband and NOTHING MORE... and as the day went on my voice when I would try to talk would be more breathy and make me dizzy and be a whisper... and it was like it took more and more breaths and I got very little in return. Its been that way for over a week now.  No amount of voice rest helps.    I was more concerned so I called speech and they set up an ENT (ear, nose and throat appointment) and told me to go back on voice rest...

AND TODAY

Went to the appointment, put the camera back down... turns out there is some muscle atrophy and my right vocal cord is bowing back a little more than it was previously making the space between my vocal cords a bit bigger and although the left cord is still working extra hard, it is not able to compensate enough and thats why I am losing more air and without them touching my sounds are mostly gone.  Hence why I get dizzy when I do not talk that much because I stop to take breath so often I am hyperventilating a little. WHICH IS VERY FRUSRATING... cause it makes me sick if I talk too much.... so now i get to be frustrated that no one can hear me, no one can understand me and now i get fatigued and lightheaded with each conversation i even attempt to have!  ARG...

SO he put me in for an injection where they will numb my skin put the camera up my nose and inject a synthetic solution directly into my right (and if i can tolerate it- Left) vocal cord.  The idea is to "beef" it up a bit so it moves closer to midline and therefore the left side can make more contact and give me some sort of voice.  It is only TEMPORARY... and it can wear off in a few weeks to a month- may last longer depends on how quickly my body resorbs the material.  It does NOT affect the healing process.  The idea is to give me a better quality of life until my nerve wakes back up...

IF my nerve is still paralyzed by 6 mo post-op (September) then they will talk about more permanent surgery to fix my voice.

Emotionally, not having a voice, then having it come back a little, then going to nothing is the most frustrating thing ever.  Especially when everything else is healing and getting back to normal.  If this is the new normal, spending one year of my life in a whisper while trying to provide for my family and not go absolutely insane because my dog can breathe louder than I can talk will be the biggest challenge of my life.

There are good and bad points from all this...

1) I had a better voice, that means there is potential for it to get better- the radiation could have caused some inflammation which is contributing to this and if its inflammation it will get better.

2) This will give me a chance to be heard and after over 2 months of whispers and strain and agony I would go through this just to get a chance to say I love you to my mom and have her hear me without saying "what"... or at least it will let me remember what I am supposed to sound like cause these days i cant even remember...

3) I could be paralyzed, we have to give 1 year for nerve to return before they call me completely paralyzed, but if i am then more surgery is ahead. Good news is from what i read the surgery can get me completely back to normal so there is hope there too...

4) I gotta figure out something because if I cant talk a few sentences a day NO WAY i can go back to doing my job and I worked too hard to get here to give up and say oh well... Hell i m studying daily to make sure the material is fresh in my mind.  So there has to be a way to get me back to work and communicating is a huge part of that.

5) He did say that he has had patients who go their voice back within the first year... so i still got time... its only been a hair over 2 months...

6) I had cancer and it did spread a little and now I dont- and that is a blessing.  Just a reminder to everyone that you NEVER ignore your health!!  Get checked out and be an advocate for yourself!  I could have spared my voice and sanity all this stress if I would have had this looked at in PA school...

So in closing, I am glad to be feeling mostly normal but i struggle with the voice getting worse.  I was sad before and at least then I was audible, but now I just feel more defeated.  Its like one thing hitting after another.  I was very down most of the week, but I did get some answers which explain what is happening to me.  That helps me to process.  I am hopeful for this injection and until proven otherwise- i still have hope that its not permanent.  I go to bed and dream that somewhere spontaneously I open my mouth and I can TALK- hell sometimes its a full blown glee song... its a great feeling- at least for the first few seconds until I wake up... so we shall see.  Im waiting for them to schedule the injection then for 7 days ill be worse than i am now, then i should be able to talk... however brief it is...

So until next time, the journey continues.  In the meantime I am going to embrace my listening skills and looking to pick up sign language...

Thanks for everyones support and God Bless

Radioactive Iodine and Whole Body Scan (WBS) ... gee that was fun

Hello to all my fellow followers... today was a great day... It started with cereal... yup a plain ole regular bowl of cereal with milk, the cool delicious refreshing drink who i have missed so... but i am ahead of myself... lets go over the last week or so and see how truly difficult this process is.....

SEVERE HYPOTHYROIDISM AND LOW IODINE DIET

For me the worst things to highlight were:

• Having a "foggy mind"
• unless u experience it, its hard to say or explain.  The best I can do is to say you are watching the earth slowly pass you by.  You can watch and u know what is going on, but you are slow to react to it.  Its i suppose what dementia might feel like except for me it lasted anywhere from minutes to hours.  Sometimes it was only time that went on forever.  Other times, i felt like i was walking in a swimming pool chasing after someone in full freestyle swim.  It was hard in general, harder for someone like me used to a mind that thinks of 100 things all at once.  Used to be so in control ... 

• The Dizziness
• So no one really mentioned that- but i had SO  MUCH DIZZINESS.  At first it was only with standing.  Then with sitting or turning... Then dizzy when i ate or closed my eyes.  Or watched my husband moved too fast. It was like Parkinsons ( and i dont mean to offend anyone or who may know anyone with that terrible disease) but it was initiating ANY motion that was a challenge. To be 30 and struggle just to stand, or take more than 3 minutes before u can take one step.  To move so slowly yet ur mind might be clear as day is such a weird and awkward sensation. 
• Hunger
• I was so hungry for SO MUCH of the day, but I knew I had no metabolism.  I knew i needed very little energy.  and I knew some people could gain even up to 40 lbs bc of how this disease process.  So i choose to sleep rather than satiate my hunger.  Lets face it I cant eat much anyway I was feeling so sick and dizzy just lifting a fork was a hardship at times.  And I had many restrictions on what I could eat (until i discovered the beauty of kosher salt)
• Slowed Heart Rate
• Another interesting aspect of being hypothyroid.  Not everyone will experience this, however I lead an unhealthy lifestyle before this ever started.  My baseline heart rate was 90-low 100s just because of my poor health.  Now as you who have followed along have read, for the last 2 weeks or so my heart rate when laying down miserable is in the 60s.  My heart rate after climbing up the 6 steps to get to my apt after a doc appt was in 70s... and it took so very little exercise or effort to send me into a 4 hour nap... yet another interesting part of my condition.  

The Diet Tips to spread to anyone you might know...

• YOU CAN HAVE KOSHER SALT... it does NOT contain iodine- only pure NaCl 
• Really you can have ANY kosher prepared food- as it also will contain no Iodine
• You can have crystal light and koolaid in the water (its made with Red Dye #40 which is SAFE)
•  Using paprika with lime juice and oil does make for a tasty salad dressing
• Paprika is your best friend
• My fav dish: was to make pico de gallo (diced tomatoes, white onion, diced fresh jalapeno peppers with garlic and onion powder with lime juice and kosher salt all to taste, and fresh cilantro)... to add that mixture after it masurated in the fridge for a few hours to salad or fresh george forman grilled chicken...
• You can have CORN tortilla chips from Trader Joes - only place i found chips with 0 sodium
• if you are diabetic - dont make life miserable before it has to be go ahead and have pasta and rice it is hard to give up salt... its even worse to avoid sugar AND salt

The Whole Body Scan

Things I wished I knew:

• How the scan worked?? - sadly my home hospital scanner had the camera break right before my appointment so i was taken to a sister hospital and yes as an add on which i am eternally grateful for (as that avoided me being delayed with treatment for yet another week which i dont think i could have tolerated)....
• No one ever explained what was about to happen? this was important as without my glasses I cannot see the machine and it turns out the machine MAKES NO SOUND... there is no way to tell when it actually starts (hence when u have to remain still) or when it finished (to know when u are free to reposition yourself if you have to)
• The machine is silent u are placed on a rather narrow table and the camera is set on a timer, there is no sound, no call bell no mic and my test was administered by 4 separate people.  They hit a button and leave the room. The machine just sits and counts the radiation you emit over a 10 min peroid.  There is a quiet beep the machine makes when the timer goes off but i had no idea what that was or meant.  You will be scanned in 8 different places total, each spot was 10 minutes.  After the beep the technician comes in repositions the table and hits the timer again. This goes on and on til all 8 scans are complete.  After the first 5 scans (head, chest, abdomen, pelvis, femur) the camera is rotated 180 degrees to scan the posterior side (thank god you do not have to roll on ur tummy) and they then scan the pelvis, abdomen and head again)... THEN YOU ARE DONE... it takes (depending on the protocol) 1 hr -1.5 hrs total.  I asked for a radio to be turned on again the machine is QUIET makes NO SOUND but it can be terribly hard to sit still that long in silence. 
• I knew i was in place but no one told me that the timer had started (i cannot see it for myself as i didnt have my glasses on) and although terribly uncomfortable i held it in and stayed as still as i could ... i was freezing and in pain not bc of the machine but because of my weight and lying without any pillows under my legs there was tremendous pressure arching my back.
• They didnt realize my discomfort bc it was hard to hear me and i tried when the machine beeped to draw attention to me or my needs but due to severe hypothyroidism and my prior vocal cord issues even without the radio i am VERY hard to hear.  Also if i had known how the machine worked- i would have asked for pillows under my legs knowing that would have helped to begin with.  
• ASK FOR BLANKETS (being that hypo, even a little hypo) its VERY COLD... blankets WILL NOT affect the scan
• Ask for a break about half way through scans (to sit up and take pressure off your back) by the time i realized i could (tech number 4 finally asked me i was an hr into the scans) i was in so much back pain it was throbbing so bad!!  DONT WAIT ... 
• I DO NOT wish to talk ill of what happened- i was blessed that I had a ride over there, that they took me in as an add on for a rather lengthy scan that yes will take a TREMENDOUS amount of time in a VERY BUSY hospital FULL of nuke scans already in place.
• what worked against them and me was:
• I had 4 separate technicians administer the scan.  Of the four only one knew the protocol.  The protocol is easy to administer but with 4 different people it did take time for each one to figure out where the other left off... So the machine makes only a tiny beep at the end of 10 minutes and i do not expect them to RUSH right in after 10 min, however the scan took an extra 35-40 minutes overall (i was being scanned for a little over 2 hours when my hospital would have done it in one) because of wasted time due to missing the beeper, and also because they had to check and recheck the protocol cause 4 different people were doing the one scan.  easy to get distracted when u have so much else going on and i dont begrudge them that I have been there. 
• I wasnt set up properly to begin with.  In the rush I wasnt set up with blankets knowing i was very very hypo (that i did tell them before it started) and If someone explained the actual test then i could have asked for something under my legs to take the weight off my back and also for a proper break.  
• NEVER START A TEST BEFORE THE PATIENT TELLS YOU THEY ARE COMFORTABLE esp when u have to be still for 1 hr. 
• It would have been nice just to know how the scan works i had no idea when i could and couldnt move and at times i did feel forgotten.  Those are easy to fix but it took over an hr before someone told me how the machine worked

THE THERAPEUTIC RADIATION THERAPY

As this post is already pretty long i will not bore you with all the details but highlight good information to know and how lucky I truely am.

• The radiation pill is Iodine 131.  The dose is based on a calculation, as well as the whole body scan results.  The dose can be as small as 40mCi or on average between 70-100 mCi.  The Nuke medicine doctor will talk to you at length about precautions at home.  I was to be isolated for 2 days (sleep alone, eat with separate utensils, have sole use of a bathroom with shower and flush multiple times etc).  I was to stay low iodine diet for the first 24 hours (i wasnt to eat for 2 hours after the pill to maxmize absorption).  After 24 hours I can take my synthroid and cytomel
• A side note. ASK FOR CYTOMEL bridging... especially if you are unfortunate enough to be like me and very very hypothryoid... I FELT THE FOG LIFTED after the first dose
• cytomel is 4 times stronger than synthroid because it is T3 the active form of hormone... now i am not cured of hypo i will stake weeks to get back to normal... but it will take the fog and depression off your shoulders so you can begin to feel normal again... 

I was given 189 mCi of radioactive Iodine 131.  I was blessed.  My scan showed microscopic disease in the neck still.  THIS IS NORMAL.  The surgeon can ONLY remove what they see with the eye, and it is impossible to get rid of it all when my disease was so extensive.  So i was given very close to the maximum dose of 200mCi.  You take the pill then high tail it to the car and get home.  I personally napped cause by then i was so exhausted.  

DRINK LOTS OF WATER... not gallons thats not safe even for normal people... but i am so hypo that i can nap for 4 hrs at a time... DONT DO THAT... set an alarm and drink something every hour. And go to bed when its time.  DO NOT WAKE UP ON PURPOSE IN THE NIGHT... however if you do waken, even to roll over take a sip of water.  make sure overall you drink  at least 8 -10 glasses in a day.  The more u drink the more any residual iodine is excreted through the urine.  

I was lucky i felt only some vague tingling in my mouth, neck and lips.  Kinda like touching your tongue to a battery.  The more you drink the more you can ensure your salivary glands (and parotid gland) are intact.  Also helps wash off your taste buds.  I was LUCKY. I can still taste food just fine.  

Throughout the night i woke up several times with VERY VERY DRY mouth... but i had water right next to my bed and with a few sips that also improved.  I WAS LUCKY... 

I took my cytomel with synthroid today around 9am.  I felt like myself again.  I have NOT been foggy or sleepy today (although i took two short naps anyway)... I got up and down without dizziness.  And for the first time in weeks... i felt hope and grace.  Grace that i am done.  Grace that i zapped this cancer and my scan next thursday should confirm i am cured.  Grace that although i have suffered at times I am strong and my mind and body may have abandoned me at times I can endure... 

I also learned a lot about my body ... my health ... and food.  the wrong foods can cripple you.  They can put disease upon you that is misery itself.  it didnt help i was overweight to begin with.  It didnt help i am diabetic.  It didnt help i was so dependent on salt i forgot how food is supposed to taste to begin with.  I am young and to be so debilitated at times was so freightening.  To watch someone u love in pain because of ur illness because of your choices.... 

I loved tasting food again for the first time.  Getting creative with spices and yes even for me getting outside my normal comfort zone just to avoid the same meals in the same ways for day after day for over a month.  

This is long enough but i hope u can see how blessed you are... I know how blessed I am.  I have cancer.  I am a cancer survivor.  My cancer can be cured with two little pills.  That and a little surgery.  My pills can at worst ruin taste buds for a few days to a few weeks.  But i have my hair, and my ovaries.  I may not talk right but i talk.  I will also have kids one day (God willing).  I can work.  I can breathe.  How many can say that with cancer.  How many can be cured?  How many can take two pills, one dose, one overall treatment when its been there as long as mine (at least 6 + years) and still be cured.... 

I am blessed and I intend to use this to change my life.  It has changed my life.  It has opened my eyes to possibility.  And to how dangerous the food we eat can be.  The food did not give me cancer. But if i dont take care what toxins go inside my body... I am doomed to be trapped by the consequences when my body fails to handle the sugar, the salt, even the water or weight.  I was forced to be without comfort food.  To be without the luxury of emotional eating.  To make the choice to do what i needed to instead of what i wanted.  And i did.  And i m here.  I have been educated where salt hides.  Where sugar hides... truly seen how much SALT i eat in a day without ADDING a DROP to the food... 

I am born again.  Tomorrow is a new day.  Tomorrow I am off isolation.  Tomorrow is a day of change.  Do not wait til disease FORCES you to change, takes away your choices... 

Tomorrow i can start living a new life.... What will you do with tomorrow?

God Bless you all... and Be praised he saw me through this!

Ahhh the joy of being Hypothyroid... =(

So its been a few weeks since my last blog, thought i would take a minute to go into the full brunt of hypothyroidism...

I was put on my cytomel (short acting thyroid medicine) from March 2nd to March 16th... then nothing.  I went to visit my brother for a week which was FANTASTIC... North Carolina really is a very pretty and such a CLEAN place... like really they have signs posted to list how clean each place is right down to their elevators- i swear u could lick the ground in the elevators and how many places can u say that LOL

I digress...
So the first week was ok i got tired but still could walk around and symptoms were pretty mild. I was able to craft and crochet, I was able to clean a bit and walk the dog... it really wasnt that bad... yet...

 I was also instructed to start a LOW IODINE diet.  Thats not low salt... its LOW IODINE... problem is - since the 1930s IODINE has been added to everything... to prevent thyroid goiters dontcha know LOL... which was a big problem back then... not enough iodine in the diet... hence where salt goes iodine does also.  So the only thing i can have is FRESH veggies, fruits (sadly i dont like many of them), oatmeal, pasta, rice, chicken and beef... yea... without any salt or anything packaged cooking does become a challenge.   its gets boring fast... there is only so much lime paprika garlic oil salad dressing one can eat...

You really dont think how much salt we truly eat in our american diet.  I cant even use mustard or ketchup.  Nothing canned.  Not even Sea Salt which says on the package NO IODINE ADDED... why ... because Iodine is a natural element in the ocean so when scientists tested the iodine content it was still too high!!!  ARGH... I finally found some salvation in my new best friend- Kosher Salt.

** a side note on kosher.  Kosher isnt an ingredient in jewish food it talks about how the food is prepared... part of that preparation involves using salt to absorb ANY of the blood and fluids in meat which is strickley prohibited in the diet.  Part of this process involves taking the meat and covering it in this salt then rinsing it off.  Its not used in actual consumption ONLY in preparation as such they DONT ADD IODINE to it... MEANING I CAN FINALLY EAT SALT... for those nerds like me out there just plain ole NaCl!!  no fillers no addiditives nothing prepared by machine... ***

Once we got kosher salt food perked my spirits up a little.  See previous to that if i had salad- i would use lots of lime juice with olive oil and spices (non salt spices) usually paprika to add flavor.  I became a huge fan of cucumber and onions.  got tired of chicken quickly... but onto the meat of the matter

Hypothyroidism- The bad, and the ulgy

So starting round the 19th  i started to feel different... i would say bad but then a week later i really really felt bad so for now i ll only say it was just different.  I took daily naps, and felt more depressed and just off altogether.  Went for repeat blood test which finally showed i was ready (my tsh was 54 - only needed to be 30)... I was then told monday the second i would go to nuke med (nuclear medicine) and i assumed that starting monday i d get my pill and be on my way to finally feeling better and eating normal again...

JUST KIDDING...

Nuke Med called today to say the process will go as follows... Monday the 2nd i will get a tiny pill then go home... I ll come in Wed and do a body scan (see below )... Then i come in Thursday and FINALLY get my therapeutic dose of radiation for my cancer... and lastly on FRIDAY i will be able to resume my thyroid meds and a normal diet ... by Saturday i ll be off isolation and able to hug my husband again.  I also asked if i can be bridged with my cytomel seeing how i am already so symptomatic and by the time i actually take my pills it ll be ANOTHER TWO WEEKS OF THIS MADDNESS!!   (that means i ll take both long and short acting meds... it ll make my symptoms go away faster even though my blood counts will still suck )...

So thats the bummer- My TSH (thyroid stimulating hormone) was almost ready on March 15th, however it spiked to 54 by March 23rd... by April 9th (when i can take meds...) i imagine its gonna be way worse than that...

On March 23rd- i had the worst night of my life!!  I admit i forgot several doses of my calcium (tums)... Since the surgery i was taking up to 1600 mg elemental calcium three times daily... SO starting back in mid march when i was with my brother my hands n feet were a little tingly... kinda like you lay on your arms wrong... but that was it so i took doses when i remembered and thought nothing of it...

then it started

well that day on the 23rd i was going in to check my blood (thats the test that later came back at 54) and  could barely keep my eyes open ... I had to use a wheelchair to get to and from the appt...  exhausted cant cover it... it was past that. Just to raise my arm made me dizzy.  And i was in such pain... i spent half the day crying- saying "its not supposed to be painful, why does it hurt?"

James was too afraid to have me take pain meds with my low metabolism.  He held me tight and rubbed and kissed my forehead.  It was the hardest night of our marriage and my life thus far.  The dog had bad diarrhea (?not sure why) James went out 7 times in one hour to help him... both cats were re-guritating food... all in all not a good day at all... i couldnt get comfortable anywhere... it was just bad...

My body ached all over.  My arms were sore, my chest was sore.  it was an achy an overworked it type pain.  Like acid was burning me from the inside out.  i took a hot shower, laid down... covered up... Despite exhaustion I couldnt sleep cause of the pain.  Everything down to breathing was a struggle.  my joints were like tiny alarms going off that just fired all the time and i couldnt make them stop... I hated feeling that way.  I took two extra strength tums, two extra strength tylenol and prayed.  We all finally moved to the living room where i could sit up.  Turned the heat on cause i was soooo cold.  I spent most of the month feeling cold, but that night the temp dropped outside to 38 and inside the windows leak so bad it was in the 60s in the apt.  I was covered in 5 blankets  and still shivering which didnt help the pain at all... By 4 am i finally slept.

When i woke up in the am my pain was gone i was still very tired from the rough night, but us the animals and the marriage survived.  I called the endocrinologist who said it was a combo of my hypothyroid with my low calcium level that did that.  Needless to say i take my tums 3 times a day now and dont miss a single dose.  So after reading that night you can imagine how excited i am to spend the next week and half waiting for my pill.

I am very very tired all the time.  I am very very dizzy with little movement.  Even if my husband moves around too fast it gives me vertigo.  Once i get going i am ok but the getting up and sitting down is a little rough.  I sleep 2-3 hour naps 2- 3 times a day... =(  that part depresses me the most i hate sleeping the day away.  I am very depressed... Doesnt help that we are having car troubles and it looks like we ll be forced into one car from now on... in order to make finances easier we will also have to move somewhere cheaper by June as well...

When it rains it pours... My pastor said God doesnt give us what he doesnt think we can handle- well this week has been very very rough- but we do endure.  James and I are much much closer not just as a couple but as individuals who have struggled as well... He is doing a great job taking care of me which i know is not easy... pushed himself to places he didnt think he would go.  And this month is our 6 month anniversary of marriage to boot!!  Hard to imagine but yea all this in the first year of marriage.... tallk about up hill both ways in the snow with dogs chasing... I learned that is a metaphor for slow growing cancer with depression n pain and sorrow wrapped in an inability to communicate and disability with the IRS and DMV chasing us both ways with the Dept of Education loan services in a close third ... in the cold... with sick pets...

at least my phone works, tv isnt broke and  i do have a really cute very well behaved puppy ... and well it can always be worse... its only 7 more days before i can take meds and start to feel normal again... you can do anything for 7 more days...

sorry this was kinda long... took me 2 days to write it all down... its kinda all over the place and as scrambled as my emotions but i hope it gives a glimpse into how im feeling and isnt too morbid... or confusing...

its naptime again so im gonna run... will try to finish an update that explains the body scans and radiation and its glory im about to experience...

Gods Blessings and Peace and good health to you all

Updates and trouble swallowing still =(

So its been a few days and sadly family had to return home... I will say thank God for my family!  This is one of the hardest and most scary things I have ever done and to have my mom and aunt here really did help me get through the first few days.  I cant imagine how hard it is for them to watch me go through this and especially so young.  They also have a lot going on in their lives and have made sacrifices to be here and support me.  I feel terrible that not only did this happen but that it affects so many people around me.  I used to call my mom and aunt daily and now im forbidden to be on a phone.  I get yelled at all the time for talking but really how do you just stop.  And even when i do you have to be close to me to even hear me LOL... I ve been a motor mouth my whole life... since i was 2... I was loud and obnoxious my whole life.... i project other peoples words when no one can hear them... how do you just shut it off.  How do you process your emotions when you cant express yourself.   This leads me to my latest update... 

More sad news

So I went to see speech rehab on monday and they did a video swallowing eval on me cause i was having A LOT of trouble swallowing thin liquids.  The pain from the surgery is really a lot better but everytime I cough and ESPECIALLY when i vomit it hurts so much.... not just in my throat but it goes up your nose and in your ears and it BURNS... =(  that has sucked a lot.  


So the swallow eval showed that my Right Vocal Cord was paralyzed.  =(  but at least that does explain my trouble with swallowing and why my voice is so funny.  For those non medical people i found a great website with some pics to explain why vocal cord paralysis also affects swallowing.... continue below:


Briefly, the voicebox is composed of a right and left vocal cord that is attached on one end, much like a "V". When the vocal cords are apart, air moves in between the vocal cords into your windpipe that allows one to breathe. When a person wants to sing/talk or say "eee," the vocal cords come together and vibrate very quickly creating the voice.

When the vocal cords are apart, one is moving air in and out from the lungs.

When the vocal cords are together, they vibrate very quickly creating a voice.

A "paralyzed" vocal cord is when one of the vocal cords does not move resulting in a gap between the vocal cords. This gap when attempting to talk results in air escape which causes the "breathy" sounding voice. 

In this illustration, the patient is trying to say "eee," but notice that the vocal cord on the left is not moving to the middle resulting in a gap between the vocal cords. The left vocal cord is paralyzed.

Here is a website video that kinda shows what mine looked like... its exactly the same but for me the right side is paralyzed.  Click on the link below and then click on the video and pay attention to the right side of the video (left vocal cord) and notice how it doesnt really move... mine is the same thing just flipped around


http://emedicine.medscape.com/article/863779-overview



 In some cases, however, the dysphonia can be high-pitched because of a compensated lengthening of the vocal folds to achieve better glottic closure. Often, unilateral vocal fold paralysis (UVFP) is associated with dysphagia, specifically with liquids, because the resultant glottal incompetence can lead to aspiration. This is especially true if the unilateral vocal fold paralysis (UVFP) is due to a high vagal lesion that results in both a recurrent laryngeal nerve and superior laryngeal nerve palsy.


Patients with unilateral vocal fold paralysis (UVFP) often report shortness of breath or a feeling of running out of air. Very little negative physiological impact upon pulmonary function actually occurs in patients with unilateral vocal fold paralysis (UVFP); however, because of the glottal incompetence, they experience significant air wasting and, thus, experience the sensation of shortness of breath and running out of air during speech. In addition, glottal closure is required for individuals to create positive end expiratory pressure (PEEP). Thus, some patients with an immediate postoperative unilateral vocal fold paralysis (UVFP) can experience decreased pulmonary function because of loss of the natural PEEP that occurs with glottal closure. The glottic closure that allows a forceful cough is also compromised and thus a weak, unsuccessful cough is often reported by patients.


SO to summarize

• The tumor was wrapped more like entangled in my nerve to my vocal cords and it did get moved around a lot but it WAS NOT severed!
• My voice stays mostly low pitch and breathy but still sounds like me unless...
• I try to talk loud- when i project my voice gets higher pitched and breaks a little
• With normal talking over long times i start to lose my voice altogether 
• in other words i get voice fatigue very easily
• I get very winded with speech at times
• I choke a lot on liquids and my own spit and secretions which causes me to cough a lot
• i also have an urge to clear my throat a lot which also makes me cough
• My cough kinda sucks so instead i use muscles from my chest all the way to my belly create kinda a big sneeze instead to get the fluids out
• Not sure if its permanent or not will have to wait awhile and see- while what i read online about many like me who go through this says it can take a year or more
• HOWEVER my nerve was NOT cut, and that means if intact it can wake up again and give me my voice back
• Also my calcium levels were very low bc my parathyroid glands (which regulate calcium) were in shock and i am on supplimentation to fix that- so when that gets fixed it may bounce back also cause both nerves and muscles depend on calcium
• I do overall have better spirits and pray everyday for healing so that I can still do the job that I love

WHATS NEXT?


well currently i am on cytomel a short acting form of the Thyroid hormone which is why right now i feel ok.  In another week, i m pretty sure they will take that pill away from me to start preparing me for the radioactive iodine treatment.  I will have to be hypothyroid (very hypothyroid) for about 2 weeks then i will go to the hospital and take the pill.  I ll be on isolation in my own house for about 5-7 days.  Then i can start synthroid (long acting thyroid hormone) it ll take about 2 weeks or so for that to really make a difference and take away all the symptoms (fatigue, moodiness, depression, depressed heart rate, weight gain)... 


So the road to cure is still long for me and there are still challenges to overcome.  But today is a great day.  I got through a whole glass of tea without choking!!! The sky is clear the sun bright and God (along with grandma and relatives in heaven) are watching over me.  I know that this could have been much worse.  They dug all in my chest and all the way to my spine.  Clearly it was spreading and had it hit my lungs it could have been MUCH MUCH worse.  I had a cancer that was treatable and even CUREABLE.  And without chemo or other evil things.  I can have kids eventually.  I can work and walk and communicate (although people have to pay more attention now LOL) 


So this year will be rough. But 5 years from now hopefully i will have a family of my own and this will be just another bump in the road.  I wont lie.  I am very scared of whats ahead.  I feel like i ve been through so much already.  I wish i recorded my voice.  I wish i recorded myself singing to play back for my future children.  I wish i had stopped and had this looked at 5 years ago.  But looking backward wont change anything and only serves to bring me down.  Those who love me have shown me that I can only look forward.  I have to forgive myself as we are all not perfect and I do need to take better care of my body.  This has given me a new outlook on life and my future.  Although i have more bad days than good days, i am hopeful for the future.  I look forward to being healed and getting on with my life and plans.  


I thank you all for your continued support and prayers.  This is a huge change in my life.  Those who know me know that talking and sinigng  and music is my life.  I sacrificed so much to do this job I love and I am confident God put me here to do just that- so he wont leave me without a voice to speak up for patients and teach families how to take better care of themselves.  I am still mourning the loss like someone who lost a limb, but each day as i heal and get stronger i am hopeful that it will return!!


Take care and thank you


Lindsey

Post Op day 1 and day 2

Hello all....

So the surgery went very well...

HERE IS THE BEFORE

After 3.5 hours later... (and they removed the staples and placed steri strips) on Post op day 1 i looked like this

Good news:

He thinks he got it all... Turns out the cancer was spread a bit worse than the scans showed.  My thyroid wasnt the bad part but my lymph nodes were.  They took all level 3 4 & 6, then dug out my thymus gland (which is directly underneath the top of the sternum).  You need the thymus in childhood to help mature your immune system, however as an adult it should be shriveled up - HOWEVER mine was enlarged and funky looking.  Then he dug all the way to the spine to make sure there werent any other angry nodes.  And HE THINKS HE GOT IT ALL!!

Other good news
He did spare my parathyroid glands (they help me regulate calcium levels) however due to the trauma of surgery my levels are way low, thankfully easily fixed with a few tums a day

Bad News:
The tumor in the thyroid was wrapped around my recurrent laryngeal nerve.  Like encased in it. As a result my voice is a little funny.  I am very hoarse and my pitch has changed - a little higher than before.  Not sure where this will go I am scheduled for first speech rehab appt monday!  I know the endotracheal tube can change things a little but he did say that he had to move than nerve around quite a bit.  it may get better we will see.  For now... I AM ON VOICE REST... complete VOICE REST... and i hate it.  My family is here i never see them and i can t talk.  IT SUCKS... makes me very sad- but i understand why.  I understand if i give my voice time to heal i might be singing again.  Now when i listen to music all i want to do is cry.  But its only day 2 so i get it.  I am still mourning the loss anyway.  

here i am with my new dry erase board so i can tell my hubby how much i love him... (and my family too!)

Swallowing
So post operatively i had LOTS of trouble swallowing thins (for those outside medicine it means anything with the consistency of water).  I would cough and choke and that would hurt so bad i would cry.  I got eval by speech before i left the hospital and they scheduled me for a video study monday.  Said its likely due to weakness both from the low calcium level and from all the moving around they did in that area.  So for now i am on nectar thick soft solids.  And my hubby made me the BEST mac n cheese EVER!!  it was warm and tasty!!


Not very bad but interesting:
I am numb over most of my neck.  From my chin to the very side on the right all the way down to the sternum.  and over part of the left side as well.  Its not bad and i can live without it but its a unique sensation.  Esp when i go to shave my chin hair- i cant feel where the razor goes LOL

Lets see what else:

I feel very tired at certain points in the day- can be from my timing on the cytomel dose.  Without my thyroid i start to run out of metabolism energy.  The cytomel is SHORT ACTING thyroid hormone.  It helps make the symptoms better, although i feel like i cant stay awake sometimes.

Pain
MUCH BETTER TODAY!!  Its post op day 2 and i take half of the pain meds im supposed to and only 3 times a day.  Without all the coughing im way better.  Although i am lightheaded from time to time.

I got a shower today and felt like a new woman.  I am able to get around and feel sturdier on my feet.  Just to be safe I am keeping my knee high socks on.  Dont want a clot in my legs!

I am very grateful for all your prayers and good thoughts.  While I was in the hospital the chaplain prayed with me and brought me the PRETTIEST purple prayer shawl.  I wrap myself in it a lot.  It helps when i am sad.  I dont want to give you the wrong impression I am in good spirits overall.  It just feels like i lost something and i dont know if i will ever get it back.  and that takes some adjusting.

Meds
So now im on 6 meds so far LOL... its wierd having a schedule.  I take 4 tums twice daily, vit d twice daily, cytomel twice daily, my pain meds, nausea meds and a few others for symptom control.

Enjoy some pics from the hospital. I did have a good time and overall a pleasant experience with my first hospitalization

 We played Gin a lot... and I WON! =)